Tuesday, June 17th - The Day Before Surgery

We arrive around 9:45 am and see that Brian and Dot are back with Kinley today. We also notice that Kinley's oxygen saturation is still between 95 and 100. Way to go baby girl! Dr. P decided not to do any of the pulmonary treatment options last night, so it turns out that Kinley actually had a quiet night and slept a lot. Maybe she is finally starting to get her day and nights straightened out. Lastly, we find out that Kinley's oxygen challenge score was 271. Pretty good for a 3 week old baby with one good lung that was entirely collapsed yesterday morning.

We met with Dr. M & Dr. W to talk about possible pulmonary treatments and the upcoming diaphragm repair surgery. For pulmonary treatments, we will do the open lung tool one more time and continue with IPV treatments every 6 hours. For surgery, neither doctor has seen a reason to cancel and, as of right now, Kinley is confirmed on the surgery schedule for tomorrow at 1:00 pm. Later today Kinley and all of her equipment (ECMO machine, ventilator and NO machine) will be rolled into the operating room that is next to Kinley's current room. The surgery will be done on ECMO because Kinley has not been able to show that she can support herself safely off of ECMO. Dr. M also mentioned that the ECMO tubes going into Kinley's neck have slid out a tiny bit and may need to replaced during surgery. Kinley has been on antibiotics, for her pneumonia, for 10 days, but we will continue them through her surgery to make sure her pneumonia does not return. The biggest risk of surgery on ECMO is loss of blood, both during and more importantly after surgery. This is due to the heparin (blood thinner) that Kinley must be have to be on ECMO. Therefore, the goal after surgery will be to get Kinley off of ECMO within 48 to 72 hours to decrease her risk of bleeding.

Kinley's first pulmonary treatment of today is an IPV treatment. Kinley handles it really well and does not even drop her sats during the treatment.

Early this afternoon Pablo, a surgeon, stops by Kinley's bedside to discuss surgery plans tomorrow and to get a consent form signed. We start off by talking about the how long the surgery will last. The length of time for a diaphragm repair surgery all depends on the size of the hole in the diaphragm. A diaphragm repair surgery with a small hole and where everything goes smoothly typically takes a couple of hours. Unfortunately for everyone, there is no way to know how big the hole is until they have Kinley in surgery. A small hole means that the surgeons will be able sew tissue to tissue to repair the hole. A larger hole will require the surgeons to sew a patch into her diaphragm. Pablo reminds us that the biggest issue with surgery on ECMO will be excess bleeding due to the heparin. Due to excessive internal bleeding the surgeons may have to put in a chest tube or an abdominal drain to remove any excess blood collecting in those areas. Pablo re-confirms that Kinley will need to come off of ECMO soon after surgery due to bleeding risks. Coming off of ECMO soon after surgery may be a very concerning issue. Even if Kinley is not ready to support herself, she will need to come off of ECMO at some point simply because she will never completely stop bleeding until the heparin is out of her system.

After our meeting with Pablo, the respiratory therapist arrives to do the open lung tool with Kinley. Kinley must be paralyzed for this treatment because it delivers higher pressure to her lungs and we don't her to fight the ventilator to breath.

A tentative schedule is set to move Kinley into the operating room at 5:00 pm, but it doesn't look like that will happen as the operating room is currently in use.

We will keep you posted after she is moved.